Christmas this year has been overwhelmingly difficult in many different ways, and yet also completely lovely shortly after the dinner was on the table. That wretched dinner! More about that one later.
Years ago, when my kids were tiny, and Toby was oh so ill and fragile, going out was nigh on impossible, so instead I promised myself that what my kids lacked in terms of days out I would make up for with fabulously fun and over-the-top birthdays and Christmases. However, I never bargained on getting cancer.
This Christmas has really given that old cancer of mine a chance to showcase its talents which are total and utter exhaustion, zilch energy, distracted concentration levels, crippling joint pain and a fairly generous helping of depressive lowness too. Absolutely everything took longer, didn't go quite to plan or even deteriorated into total disaster, or so it seemed. I just seemed to spend the previous three weeks working harder for longer hours than I've ever had to before, and just not achieving anything at all worth noticing. The house was a tip, and the harder I tidied the more tippish it seemed. The more planning I did the more catastrophically pear-shaped things went. Quite frankly, I've always been like Mrs Christmas, loving every minute of pulling everything out of the bag and making it all happen, but this year I was Mrs Christmas Misery personified.
Christmas dinner was a nightmare. I could not get my head around timings or cooking methods or gravy, bread sauce and sprouts whatsoever. How have I got everything in the oven and out simultaneously and on time in previous years? I haven't got a clue. All I know is that all I wanted to do by ten o'clock on Christmas morning was to sit on the floor, burst into tears, throw the sodding lot in the bin and get someone else to produce cheese on toast for all and sundry instead.
Somehow it all worked, but I've learned some valuable lessons in the process. At 2.30pm baked salmon fillet with a herb and lemon sauce on brown bread and butter was served, and swiftly followed by Turkey, Ham, Stuffing, Pigs in Blankets, Roast Potatoes, Bread Sauce, Sprouts, Parsnip, Broccoli, Peas and Gravy at 3 O'clock on the dot. All by myself, and the clearing up too.
So what were those lessons? Quite simply, never again. I've had to face up to the fact that I'm just not well enough anymore. The stress and the panic and the worry and the going to bed at 3am for a week or so beforehand just to try and get everything done is crazy. If I'm lucky enough to still be alive next Christmas and I do this all over again, then I would really be pushing my luck for the Christmas after that.
However, next Christmas will not be the same, nor any Christmas beyond that one ever again, and not because of my cancer, though goodness knows that may impact on future Christmases a fair bit too.
The main thing I've had to cope with is the sadness that this year was an end-of-an-era Christmas, with all sorts of things beyond my control about to change for our family.
The first change is heartbreakingly difficult to even write about, and it has taken months of very difficult emotions to cope with to accept this change as an inevitability. Toby is leaving home. I know that this is age-appropriate, and at 19, a vast swathe of his age-group are away at uni or off doing their own thing, but with Toby it is so different. He still has the mental age of a 2 year old, and the mindset of a toddler. He is very Mummy-clingy, and has no clue of what we are planning for him and why.
The very sad reality is that I am no longer well enough or strong enough to care for him 24/7. I tuned that one out and lived in denial very successfully for a very long time, but then a tragic event brought it to a head. I know of another breast cancer patient whose disease was following a near identical pattern to mine. She, too, was doing comparatively well until her disease started progressing very suddenly, and in the space of 6 weeks she had died. It was a huge shock to her family, and has given me a bit of a wake-up call to ensure Toby is properly cared for if the same thing were to happen to me.
If I was to deteriorate suddenly, what would happen to him? Social Services would have to act very quickly, and may have no choice but to shoehorn him into a situation which may not be suitable or where he may not be happy, and he wouldn't have me fit and well enough to be banging or doors if things are going pear-shaped, or to visit him several times a week to help him settle in.
One day, I will die, hopefully not for a very long time yet, but when that day comes, I want it to be a sadness for Toby, rather than a tragedy. The idea of him losing his mummy and his home in one fell swoop is just too much for me to comprehend. I owe it to him to ensure he is happy and settled elsewhere before I toddle off the edge of this planet.
Making such a major decision has been probably the hardest thing I have ever had to do, The idea of Toby, as vulnerable and dependent on others as he is, being cared for in some sort of residential setting is just the stuff of my nightmares, and has been for several years. When he was very little, he was not expected to survive, which was incredibly hard to accept and live with on a daily basis. At the time, I thought that was the worst thing that could possibly happen to a mother, knowing with virtual certainty that her offspring will die in childhood.
Now I wonder if that really is the saddest possible outcome. At least he would only have known the type of love that a warm, close-knit family can offer. For years I have woken in the night tortured by the image of a Toby in his fifties, living somewhere else, unhappy, unloved and unable to make his needs and wants understood clearly. All learning disabled adults are vulnerable to abuse of all kinds, but when they are also largely non-verbal, these fears for your child's future are magnified beyond all proportion.
My job is to make sure that we springboard him into his new setting as positively as possible, and that I am still well enough to advocate for him for long enough until Francesca and Adam are sufficiently confident to take over. He will always be a huge part of this family wherever he is living, and I am trying to console myself with the fact that, if this goes well, our relationship could develop so that I am "just his mummy" for the first time in our lives. Of course he will still come home often, and we will visit him frequently too. Yet other people will be there to do his physical care and cajoling and giving him his medicines; all that stuff will be out of the way so that he and I can just have fun in the very silly ways we both enjoy together.
In the next few days, I'm hoping to write another post about the whole topic of care, and the decisions I have had to make and why, but right now there's another change to tell you about too.
I'm going to be a grandmother to a little baby boy in April, courtesy of my youngest son, Adam and his lovely girlfriend, Alex. They told both Grandmothers-to-be together in the same week their GCSE results came out, so they are far too young in most people's eyes. It's not easy to become a parent when you haven't even finished your own childhood yet, but I am so proud of both of them in the way they have taken it on board. They are acting responsibly, saving for the baby, working hard and pulling together - they may be young but they are growing up incredibly fast and showing a level of maturity that I've seen lacking in new parents double their age.
There are huge social stigmas attached to teenage pregnancy, and I've done more reading up on the subject than I ever thought possible. Yet how can the birth of a brand new baby ever be anything other than joyful? In many ways this little boy is already blessed. He is being born into two incredibly strong, resilient and loving families who are both pulling together already to support this new little family unit in every way we know how to.
If you have been reading this blog for a few months you may remember that the one thing I was very sad about when I was diagnosed with Stage iv cancer was that I was unlikely to meet my grandchildren. If Adam and Alex had waited a more conventional extra 10 years before starting a family, that may well have been the case, but now I can look forward to being a fully-fledged Grandma with babysitting duties and everything else Grandmas are good at doing.
In our situation, though, I feel very strongly that my role is to support them all through thick and thin, come what may. When they leave the house with the baby they are going to have to learn how to grow a thicker skin to deal with hostile stares, remarks, judgements and ignorant assumptions from strangers who won't understand that young parents need more support, not less.
Teenage parenthood does not have to be a disaster, in fact, I'm hopeful that this baby could actually be the making of both of them. As long as we all support them so they can finish their education so that they have a reasonable earning capacity, they don't have to be a poverty breadline statistic either. If I'm still around I will be highly amused at watching Adam deal with parenting a teenager when he is still in his twenties, but having seen both of them becoming focussed and forward-thinking by the day, I'm sure they'll both deal with whatever challenges parenthood brings them admirably.
Even Francesca is off, out and about, doing her own thing. She has made me brim with pride and quake with fear in equal measures this year, as she has discovered a travel bug and fallen in love with Italy. She spent several weeks in the summer as an Au Pair on a Sicilian beach for an extended Milanese family supervising 5 small children. Then she enrolled on an intensive language course in Rome, absolutely falling for the place. This weekend she did both Rome and Bologna, managing to make it home in time for Christmas but arriving at Heathrow in the height of the worst storm we've had for years. I have a feeling she'll be spending a lot of 2014 in pastures new, and I'm thrilled to see her making the most of her youth.
It was only May 2012 that I was diagnosed with cancer, and my biggest fear then was leaving the three children motherless, well before they are ready. They are still nowhere near ready for me to pop my clogs, but just look at how far all three have come in the space of less than 2 years.
Back to Christmas. Dinner was on the table but it took me an hour or so to get my own Christmas spirit flowing nicely again, possibly helped in the end by a couple of glasses of good red wine. By the evening, things were great, the kids were happy, the whole family was there and we laughed like drains til the small hours of the morning. In the end, it was probably one of the nicest and happiest Christmases ever.
Who knows what next Christmas will look like. The dynamic will definitely have changed, but Toby, our very own family Christmas King, will definitely be at home for the whole of Christmas. Who knows about the others? Francesca, Adam, Alex and Baby will know how welcome they will be, as will everyone else in our extended family, but it's now up to my kids to decide for themselves to do what feels right for them at Christmas. One small change I may make though, next year it could well be cheese on toast for Christmas Dinner.
Friday, 27 December 2013
Wednesday, 4 December 2013
Coke Floats & Chemo: A long way from perfect
Coke Floats & Chemo: A long way from perfect: It's a scary old thing, this book-writing malarkey, and for several days this week I just convinced myself that everything I had so far ...
A long way from perfect
It's a scary old thing, this book-writing malarkey, and for several days this week I just convinced myself that everything I had so far written was utter rubbish, and that the whole caboodle was a crazy idea.
I think part of it is because the book is supposed to be a "How to" guide at bringing up disabled children, which is very much my specialist knowledge since that's roughly about all I've been doing for the past couple of decades, but it still feels quite bold and big-headed to shout out to the world I'm an expert. I haven't got it all right by any means, in fact there are days when I haven't got anything right altogether, and my kids are utterly gorgeous, engaging, funny, well-rounded young people, but they, just like their mum, are all a long way from perfect.
Quite frankly, nor would I want them to be. How boringly conventional and predictable life would be then, hey? But if people are kind enough to buy and read this book when it's published, won't they be expecting me to be some kind of Superwoman with "Peter Perfect" kids? Hell, no. I really hope not.
Then there have been other dilemmas. If this book is bought for a young couple who have just been told their newborn baby has lifelong disabilities, I want it to be able to support them and make them feel it's doable and OK. So half the time I'm not putting in anything that might terrify the living daylights out of them, like what it's really like dealing with Healthcare, Social Services and Education. Then if I don't it's selling short all the parents who might be at that stage and simply banging their head against a wall desperate for some ideas as to how to go into those meetings, retain their dignity, say their piece, be heard properly, and come out of the meeting knowing that some good will come out of all that stress. I had a bit of a wake-up call along these lines this week, when two mothers asked for my help about how best to deal with social services. They are not my stories to tell, but if I tell you I was pacing up and down in a fury and they aren't even about my own kids, I think you can imagine just how awful a service they are being offered, or more to the point, not even being offered.
Then there's the whole isssue of is this a book to tell people how to access services, how to keep your sanity, how to deal with the constant, relentless demands of your child and how to still manage to bring up happy, delightful children? Or is it a chance to tell my story? Well it's supposed to be the first, but using my own experiences to illustrate various points. However, once I start telling our family story, at times I've been guilty of running away with myself, getting completely stuck into it, and producing pages of what can sometimes only be described as a stream-of-consciousness rant. Hey ho again. I need a little sign up at the top of the laptop stating "Shut up, Yvonne, this isn't about you".
The stories of our trials and tribulations are valid, and stories are a rich part of our culture and actually help people learn and remember stuff, so I'm not talking about taking them out altogether, however, there have been moments when they have become so big and so ranty that they are risking squashing the whole purpose of the book.
The other problem is that so far, the book hasn't even made me laugh very much. It's all a bit dark and a bit heavy, which just won't do.
However, the night before last I actually had a chat about all these things with WM and Francesca. They really ganged up and bullied me back into action, but in a very nice, kind, good way. Francesca just said, "oh for goodness sake, Mum, this is only a first draft, you can't worry about the style or substance at all, and it's certainly far too early to even think of editing it yet". Then Malcolm added "Just write and write and write, you can re-work all sorts of bits and pieces, and you keep saying it's rubbish, but the bits you've let me read so far are fantastic!".
They are really good at this whole thing, the pair of them, so I'm very lucky. They really made me think, and also come to terms with the fact that over the past 20 years or so, I've been running on empty for a lot of the time, turning myself inside out to find more resources I didn't even know were lurking deeply buried within me. Of course, the first time I've ever revisited some of that is going to make me emotional, and there have been some really negative emotions I've had to deal with since I started this project 4 weeks or so ago. Guilt, anger, fear, abandonment, isolation, frustration... to name but a few. So of course they've spilled onto the pages too. It's probably been incredibly theraputic and cathartic, and when I go to edit, I just know the funny side of everything will also be peeping out from between the lines and it will all be great in the end.
In the middle of all of this, I got some really wonderful, very exciting news. There is a very high-profile, lovely person who has agreed to write the Foreword for the book. I did several hours of dancing around the kitchen very badly with my creaky bones, and I was certainly far too excited to write a word for the rest of the day. Maybe that's what precipitated the crisis of confidence a little bit too - if I could tell you who this person was you'd understand how now I'm really putting myself under pressure because the stakes have been upped quite significantly, and the book is now much more likely to be noticed and taken seriously because this person's reputation will really increase my credibility. So failure is simply not an option and mediocrity just won't do. This book, unlike me and the kids, needs to be as perfect as possible.
Wouldn't it be great if this book could help parents to understand their limitations better than I was able to, and put strategies in place to take care of themselves years before I ever managed. Wouldn't it be great if they don't get Breast Cancer because they knew not to run themselves into the ground far quicker and far harder than was ever good for me. I'm pretty convinced that God, or Mother Nature, or the Universe or whatever you want to call it, handed me a life-threatening illness to make absolutely damned well sure I slowed down and stopped. Like that really worked... not. I know my time is likely to be shorter than I'd have liked it to be, so I'm trying to get everything done at a 100 miles an hour, including this book. Typing it so fast I don't have time to worry about anything else.
So far I've written about 102 and a half paperback pages, and that's about two-thirds of the way through. Some of it will. of course, need to be rewritten, and humour has to be shoved in all over the place too.
Tomorrow I'm off for a publishing meeting, all very exciting, so tonight my printer has to work to print everything I've so far done. I've also got to scribble out my book objectives, an action plan, a sketch of a marketing plan, and a list of questions to write. I've also promised Francesca we'll sit down and watch some telly, and WM has just phoned too, he's promised to bring us in a takeaway tonight.
Lovely jubbly, I'd better push on.
PS. In the book I may decide to include some useful contacts and website addresses. Which ones would you recommend? Please let me know. Thank you.
I think part of it is because the book is supposed to be a "How to" guide at bringing up disabled children, which is very much my specialist knowledge since that's roughly about all I've been doing for the past couple of decades, but it still feels quite bold and big-headed to shout out to the world I'm an expert. I haven't got it all right by any means, in fact there are days when I haven't got anything right altogether, and my kids are utterly gorgeous, engaging, funny, well-rounded young people, but they, just like their mum, are all a long way from perfect.
Quite frankly, nor would I want them to be. How boringly conventional and predictable life would be then, hey? But if people are kind enough to buy and read this book when it's published, won't they be expecting me to be some kind of Superwoman with "Peter Perfect" kids? Hell, no. I really hope not.
Then there have been other dilemmas. If this book is bought for a young couple who have just been told their newborn baby has lifelong disabilities, I want it to be able to support them and make them feel it's doable and OK. So half the time I'm not putting in anything that might terrify the living daylights out of them, like what it's really like dealing with Healthcare, Social Services and Education. Then if I don't it's selling short all the parents who might be at that stage and simply banging their head against a wall desperate for some ideas as to how to go into those meetings, retain their dignity, say their piece, be heard properly, and come out of the meeting knowing that some good will come out of all that stress. I had a bit of a wake-up call along these lines this week, when two mothers asked for my help about how best to deal with social services. They are not my stories to tell, but if I tell you I was pacing up and down in a fury and they aren't even about my own kids, I think you can imagine just how awful a service they are being offered, or more to the point, not even being offered.
Then there's the whole isssue of is this a book to tell people how to access services, how to keep your sanity, how to deal with the constant, relentless demands of your child and how to still manage to bring up happy, delightful children? Or is it a chance to tell my story? Well it's supposed to be the first, but using my own experiences to illustrate various points. However, once I start telling our family story, at times I've been guilty of running away with myself, getting completely stuck into it, and producing pages of what can sometimes only be described as a stream-of-consciousness rant. Hey ho again. I need a little sign up at the top of the laptop stating "Shut up, Yvonne, this isn't about you".
The stories of our trials and tribulations are valid, and stories are a rich part of our culture and actually help people learn and remember stuff, so I'm not talking about taking them out altogether, however, there have been moments when they have become so big and so ranty that they are risking squashing the whole purpose of the book.
The other problem is that so far, the book hasn't even made me laugh very much. It's all a bit dark and a bit heavy, which just won't do.
However, the night before last I actually had a chat about all these things with WM and Francesca. They really ganged up and bullied me back into action, but in a very nice, kind, good way. Francesca just said, "oh for goodness sake, Mum, this is only a first draft, you can't worry about the style or substance at all, and it's certainly far too early to even think of editing it yet". Then Malcolm added "Just write and write and write, you can re-work all sorts of bits and pieces, and you keep saying it's rubbish, but the bits you've let me read so far are fantastic!".
They are really good at this whole thing, the pair of them, so I'm very lucky. They really made me think, and also come to terms with the fact that over the past 20 years or so, I've been running on empty for a lot of the time, turning myself inside out to find more resources I didn't even know were lurking deeply buried within me. Of course, the first time I've ever revisited some of that is going to make me emotional, and there have been some really negative emotions I've had to deal with since I started this project 4 weeks or so ago. Guilt, anger, fear, abandonment, isolation, frustration... to name but a few. So of course they've spilled onto the pages too. It's probably been incredibly theraputic and cathartic, and when I go to edit, I just know the funny side of everything will also be peeping out from between the lines and it will all be great in the end.
In the middle of all of this, I got some really wonderful, very exciting news. There is a very high-profile, lovely person who has agreed to write the Foreword for the book. I did several hours of dancing around the kitchen very badly with my creaky bones, and I was certainly far too excited to write a word for the rest of the day. Maybe that's what precipitated the crisis of confidence a little bit too - if I could tell you who this person was you'd understand how now I'm really putting myself under pressure because the stakes have been upped quite significantly, and the book is now much more likely to be noticed and taken seriously because this person's reputation will really increase my credibility. So failure is simply not an option and mediocrity just won't do. This book, unlike me and the kids, needs to be as perfect as possible.
Wouldn't it be great if this book could help parents to understand their limitations better than I was able to, and put strategies in place to take care of themselves years before I ever managed. Wouldn't it be great if they don't get Breast Cancer because they knew not to run themselves into the ground far quicker and far harder than was ever good for me. I'm pretty convinced that God, or Mother Nature, or the Universe or whatever you want to call it, handed me a life-threatening illness to make absolutely damned well sure I slowed down and stopped. Like that really worked... not. I know my time is likely to be shorter than I'd have liked it to be, so I'm trying to get everything done at a 100 miles an hour, including this book. Typing it so fast I don't have time to worry about anything else.
So far I've written about 102 and a half paperback pages, and that's about two-thirds of the way through. Some of it will. of course, need to be rewritten, and humour has to be shoved in all over the place too.
Tomorrow I'm off for a publishing meeting, all very exciting, so tonight my printer has to work to print everything I've so far done. I've also got to scribble out my book objectives, an action plan, a sketch of a marketing plan, and a list of questions to write. I've also promised Francesca we'll sit down and watch some telly, and WM has just phoned too, he's promised to bring us in a takeaway tonight.
Lovely jubbly, I'd better push on.
PS. In the book I may decide to include some useful contacts and website addresses. Which ones would you recommend? Please let me know. Thank you.
 |
| Francesca, Adam and I with a random lady in the background. |
Friday, 29 November 2013
Coke Floats & Chemo: The Special Parent's Handbook
Coke Floats & Chemo: The Special Parent's Handbook: Thanks to all the encouragement and support I've been getting recently, I've finally started writing my book, or should I say, my fi...
The Special Parent's Handbook
Thanks to all the encouragement and support I've been getting recently, I've finally started writing my book, or should I say, my first book, because I really hope there's going to be time to write a load of them. Already I've pencilled together the bones of 12 different book titles, but then if no one likes my first one, who knows whether I'll be brave enough to impose the others onto an unsuspecting world.
There are so many things I could write about, but the first one is going to be a little bit special for me, something I promised myself I'd write a very long time ago, when my son, Toby, was first born. I'm writing that book that I wish had already been written so that someone could have given it to me in those scary, lonely, bleak days when he was only ever one last breath away from being taken from us.
Of course, in those early days, I had no idea that both Francesca and Adam would also be diagnosed with a whole host of disabilities, and how different our family life would inevitably become as a result of all three of them being not quite mainstream.
Toby is so profoundly disabled that he is in a different league to my other two, and in a lot of ways I think that has done them some favours. If either of them had been helicoptered into another family where they were the only special need's child, I don't think they would have developed the resilience and resources that they have; Toby gave our whole family a very different perspective on degrees of disability.
So far, I have three firm buyers for the book, but hopefully there may be a few more once it's finished. What I'd really like is that there may be some tips, tricks or strategies that I can pass on to parents still struggling at the early stages of realisation that all may not be quite right with their child. If even one family can learn from some of my mistakes, and find a way to short cut some of the wrong paths we took as a family, then I will be really happy. I think I somehow got quite a bit of it right along the way, too, though.
Francesca and I had a bit of a laugh this evening, reminiscing over silly things that happened before she was old enough to go to school that are going into the book, but going over some of the memories has been quite difficult and has stirred up some of the long-buried sadnesses and ancient hurt, so it hasn't been a totally easy ride so far.
Bringing up three disabled children is a bit unusual, and it's given me insight into a lot of things I never would otherwise have known. Once upon a time, in those innocent days when disability was something that only ever happened to other people's families, I didn't know a single person who had a disabled child. Now I hardly know anyone who doesn't. My "disabled mummies" are hilarious, we share a gallows humour that can make you laugh til your sides are hurting far too much. I couldn't get through without them. They also are always there, and understand in a way that others can struggle with, when things go horribly wrong. Sometimes things don't even go that horribly wrong, but you reach a new moment of a brick wall, and can't stop feeling low for days on end, and they're there with the Kleenex and cuppa just when you need it the most.
Three of these lovely ladies are my "sounding board". As I write each chapter it gets emailed to Sian, Linda and Benedicte, who all look at it and tell me what should stay in, what should come out, what else needs to be said and how to make it better. One of the tips I've so far had back is "For goodness sake let them know that just because they have a disabled child they aren't ever going to be immune to other shit happening".
Good point, it really does often seem that the bad-luck goblins are queuing around the block, laughing their heads off as they wait in turn to each lay a little bit more trouble at the door. We might not be immune to trouble, but we do get fairly used to it and even calamities to happen. Having the kids I have has certainly been good training for dealing with breast cancer; I think I've somehow had to learn to deal with the unexpected, and take life as it comes.
My secret hope is that the books lead to being asked to do more public speaking, in front of audiences where my experiences might actually help to change things for the better for parents like us. It would also be nice to do well enough to pass on a little bit of a nest egg to each of the children; heaven only knows they will have far more to deal with because of their disabilities, and there's a very good chance that I might not be around to help steer them way into adulthood either because this wretched breast cancer has decided to lay down roots in my spine. A little bit of financial security would be lovely, and that's what's really keeping me going.
I've just finished Chapter 7, with another 5 to go. Then there will be an introduction, a conclusion, and a huge rewriting of sections of the book before I publish. Something really annoying keeps happening. As soon as I've pressed "send" on the email to my three ladies, my head gets stuffed full of what I've left out and better ways to say what I've said already, and I convince myself that my efforts so far are rubbish. Even when they tell me they're not, I just think they're probably being nice. Last night I got two words back from one of them about Chapter 6, she simply wrote "It's lovely". That sent me to bed with a nice warm feeling, but I woke up again this morning with every insecurity that goes with this whole writing malarkey. All I can do is my best, which isn't always easy in my household. I went on a bit of a paddy this afternoon and told anyone who'd listen that they had to shut up and leave me alone..... some days I'm lucky if I get two and a half words written before the next interruption.
Toby's in respite for a couple of days so I should be able to get my head down and concentrate, and they have promised to cook their own meals and do their own washing for the next 36 hours while I steam ahead. I'd like to get as far as Chapter 10 by Saturday morning, but I then have to squeeze in cancer treatment before collecting Toby at 2pm. The chemo room opens on Saturdays around Christmas time and they reschedule everything so no one has to go too long between treatments due to the Christmas and New Year bank holidays.
Hey, did I really just type those two scary words, "Christmas Time"? When am I going to get time to squeeze in Christmas too?! My to-list, not even counting the book, is horribly long and scary too, so I need about 20 extra days added to every week at the moment. Crazy. Does any of it matter? Unfortunately yes. Better go and get some shuteye or the Chapter 8 tomorrow morning will be nonsense and I'll sound as drunk as a skunk on the four phonecalls I have to make from the list. It's nearly 3am already, and come what may, I have to be up at 7.30am. Night night.
There are so many things I could write about, but the first one is going to be a little bit special for me, something I promised myself I'd write a very long time ago, when my son, Toby, was first born. I'm writing that book that I wish had already been written so that someone could have given it to me in those scary, lonely, bleak days when he was only ever one last breath away from being taken from us.
Of course, in those early days, I had no idea that both Francesca and Adam would also be diagnosed with a whole host of disabilities, and how different our family life would inevitably become as a result of all three of them being not quite mainstream.
Toby is so profoundly disabled that he is in a different league to my other two, and in a lot of ways I think that has done them some favours. If either of them had been helicoptered into another family where they were the only special need's child, I don't think they would have developed the resilience and resources that they have; Toby gave our whole family a very different perspective on degrees of disability.
So far, I have three firm buyers for the book, but hopefully there may be a few more once it's finished. What I'd really like is that there may be some tips, tricks or strategies that I can pass on to parents still struggling at the early stages of realisation that all may not be quite right with their child. If even one family can learn from some of my mistakes, and find a way to short cut some of the wrong paths we took as a family, then I will be really happy. I think I somehow got quite a bit of it right along the way, too, though.
Francesca and I had a bit of a laugh this evening, reminiscing over silly things that happened before she was old enough to go to school that are going into the book, but going over some of the memories has been quite difficult and has stirred up some of the long-buried sadnesses and ancient hurt, so it hasn't been a totally easy ride so far.
Bringing up three disabled children is a bit unusual, and it's given me insight into a lot of things I never would otherwise have known. Once upon a time, in those innocent days when disability was something that only ever happened to other people's families, I didn't know a single person who had a disabled child. Now I hardly know anyone who doesn't. My "disabled mummies" are hilarious, we share a gallows humour that can make you laugh til your sides are hurting far too much. I couldn't get through without them. They also are always there, and understand in a way that others can struggle with, when things go horribly wrong. Sometimes things don't even go that horribly wrong, but you reach a new moment of a brick wall, and can't stop feeling low for days on end, and they're there with the Kleenex and cuppa just when you need it the most.
Three of these lovely ladies are my "sounding board". As I write each chapter it gets emailed to Sian, Linda and Benedicte, who all look at it and tell me what should stay in, what should come out, what else needs to be said and how to make it better. One of the tips I've so far had back is "For goodness sake let them know that just because they have a disabled child they aren't ever going to be immune to other shit happening".
Good point, it really does often seem that the bad-luck goblins are queuing around the block, laughing their heads off as they wait in turn to each lay a little bit more trouble at the door. We might not be immune to trouble, but we do get fairly used to it and even calamities to happen. Having the kids I have has certainly been good training for dealing with breast cancer; I think I've somehow had to learn to deal with the unexpected, and take life as it comes.
My secret hope is that the books lead to being asked to do more public speaking, in front of audiences where my experiences might actually help to change things for the better for parents like us. It would also be nice to do well enough to pass on a little bit of a nest egg to each of the children; heaven only knows they will have far more to deal with because of their disabilities, and there's a very good chance that I might not be around to help steer them way into adulthood either because this wretched breast cancer has decided to lay down roots in my spine. A little bit of financial security would be lovely, and that's what's really keeping me going.
I've just finished Chapter 7, with another 5 to go. Then there will be an introduction, a conclusion, and a huge rewriting of sections of the book before I publish. Something really annoying keeps happening. As soon as I've pressed "send" on the email to my three ladies, my head gets stuffed full of what I've left out and better ways to say what I've said already, and I convince myself that my efforts so far are rubbish. Even when they tell me they're not, I just think they're probably being nice. Last night I got two words back from one of them about Chapter 6, she simply wrote "It's lovely". That sent me to bed with a nice warm feeling, but I woke up again this morning with every insecurity that goes with this whole writing malarkey. All I can do is my best, which isn't always easy in my household. I went on a bit of a paddy this afternoon and told anyone who'd listen that they had to shut up and leave me alone..... some days I'm lucky if I get two and a half words written before the next interruption.
Toby's in respite for a couple of days so I should be able to get my head down and concentrate, and they have promised to cook their own meals and do their own washing for the next 36 hours while I steam ahead. I'd like to get as far as Chapter 10 by Saturday morning, but I then have to squeeze in cancer treatment before collecting Toby at 2pm. The chemo room opens on Saturdays around Christmas time and they reschedule everything so no one has to go too long between treatments due to the Christmas and New Year bank holidays.
Hey, did I really just type those two scary words, "Christmas Time"? When am I going to get time to squeeze in Christmas too?! My to-list, not even counting the book, is horribly long and scary too, so I need about 20 extra days added to every week at the moment. Crazy. Does any of it matter? Unfortunately yes. Better go and get some shuteye or the Chapter 8 tomorrow morning will be nonsense and I'll sound as drunk as a skunk on the four phonecalls I have to make from the list. It's nearly 3am already, and come what may, I have to be up at 7.30am. Night night.
Monday, 11 November 2013
Coke Floats & Chemo: She's that lady with cancer, you know
Coke Floats & Chemo: She's that lady with cancer, you know: Cancer, disabled children and writing a book have totally dominated my week, with a fair amount of very kind and positive comments about my ...
She's that lady with cancer, you know
Cancer, disabled children and writing a book have totally dominated my week, with a fair amount of very kind and positive comments about my analysis of some of the problems facing our NHS too. It's been a good week, if a little bit too full-on to catch my breath very often.
Friday was Cancer Day. Not only was it my 3 weekly visit to the chemo-room for another dose of Herceptin and Zometa, the two drugs that are hopefully holding my cancer at bay, it was also my 3 monthly appointment with the Consultant Oncologist.
He is a lovely man, everything looks very encouraging, and there wasn't any bad news, indeed, there was actually some good news, so it was a bit of a surprise that it left me feeling low and sad all over the weekend.
The good news is that they have taken the decision that I'm going to stay on Herceptin indefinitely. The usual time is one year, which is roughly how long I've already been taking it. However, in women like me whose cancer has already spread, sometimes it is being taken for several years. The drug itself has only been around for 10 years, and there are pockets of women around the globe who have now been on it for 6 or 7 years or even longer, and many seem to be doing incredibly well on it, and it seems to be holding the cancer back very successfully. It they are also taking Tamoxofen or Letrozole to block their oestrogen levels too, then the odds of it working well are further increased. I come into that category since I also take Letrozole, and although there are no guarantees that it will work in every case, and there are also cases where it can suddenly seem to stop working, it is really good news.
Breakthroughs are being made in cancer treatments all the time, so the longer I keep going, perhaps there will be other new options I may be offered further down the line. So I should be dancing around the kitchen thrilled to bits, but I'm not. At first I felt flat, then very low indeed, and I'm really not sure why at all. It's probably another layer of acceptance that, whether I like it or not, cancer is lurking and will always be lurking deep inside my spine, watching and waiting until it can pounce and spread and kill me. My job, and the job of the medicines I'm on, is to do everything we can to outsmart it and keep it on the back-foot, and I suppose this weekend it just hit me all over again that that's not really the way I want to live my life, with this huge scary shadow looming over me and trying to kill me. I try to tune it out most of the time and just get on with living, but I suppose hospital appointments are always going to bring it out into the open and back into the room to bite me on the bum all over again.
I'm feeling better about it all today though, and getting the whole thing back into a more manageable perspective. Part of it is about realising that I can never turn the clock back and be exactly who I was the day before diagnosis, too much has changed. I will never feel completely well again for starters, the doctor on Friday said that this breathlessness and chest pains is probably more to do with the mastectomy scar tissue and will be with me life-long. Unless, and this one will really make a load of you who know me, or have read my previous post My Needle-Phobic Past, laugh long and loud..... unless I am prepared to try Acupuncture. We actually have a lovely, highly-skilled and very patient acupuncturist in the family, WM's sister, but it still scares the living daylights out of me.
I know that I'll never be able to walk far without becoming breathless, I know that the agonising joint pains from the side-effects of Letrozole will continue to make me feel like a crippled and weak 103 year old, and I know that the numbness in my fingers and toes won't ever subside, and that the resulting clumsiness will continue to cost me a small fortune in broken crockery. I know that my stamina will never be once what it was, nor my concentration, and I also know that forever more people will know me as "that lady with cancer". It does change people's perceptions about you, which can be isolating and lonely, but I suppose I try to change people's perceptions about cancer too, so it probably evens out.
The one great thing about having cancer for me though, is this. It really focuses the mind, it makes me want to really live and get things done, and although I could never fib and say that procrastination isn't one of the things I do really really well any more because I'm as good at it as anybody, cancer does motivate me to get on and do things that I've spent years dreaming about.
Like writing a book! Yes, really! I'm three chapters in with nine more to go, and I am so excited about it all. Last weekend I spent three days at a Seminar called "The Millionaire Author's Bootcamp" which has totally inspired me to get going. Each day at the Bootcamp we had 4 motivational speakers each talking for 90 minutes on book publishing or subjects closely related to it like PR, Self-Publishing, Internet Marketing, Public Speaking, Finding a Publisher, all sorts of things. Completely fascinating, and really gave me the kickstart I've needed for ages.
A lot of the speakers were published authors who were now very wealthy indeed, not necessarily because they had written the best book in the world, but because they had mastered how to really market it successfully on the internet, and then knew how to really engage an audience as a Public Speaker, where they were able to talk authoritatively about the subject of their book and get paid pretty well for it too. These were ordinary, nothing special people, people like you and me, and I just feel that, with the children I have, and the financially tricky situation we have stumbled along in ever since they were born, I owe it to my three to do what I can to earn some money to help them on their way into adulthood. Goodness knows, they have triumphed over so many difficulties already, and they may lose their mum well before they are ready to cope alone; a little bit of a nest-egg behind each of them might make all the difference.
I've also signed up for two more courses which I can't afford at all - one on Internet Marketing and the other on Public Speaking. The fact that I can't afford them means that I have to work really hard to implement any or all the strategies I'll learn. One of the recurrent themes on the three day seminar last week was to start living like a millionaire ..... well I've certainly been spending like one! At this rate I've have the family homeless and living in a cardboard box by Christmas unless I really make this happen - what better incentive could there be?
The book is aimed at parents of special needs children, I'm writing the book I wanted to read when Toby was first diagnosed all those moons ago. It's going to cover things like how to deal with the armies of professionals and still get the best of services for your child, how to build a support network of the right sort of help from the right sort of people, how to ensure your other children still have a gloriously happy and normalised childhood, how to ensure you don't go under and drown in the sea of admin - fancy me being the one to be advising other people on how to handle all that paperwork appallingness that comes with the territory of special needs? Ha ha ha, a match perhaps to start a bonfire in the garden? It's also covering education, a complete special needs minefield.
There are dozens of "advice" books from specialists and experts, but no parenting guidebook that I can find that is written by another parent who has learnt the hard way, by living and doing it. I'm hoping it will make parents like me smile too sometimes, and help them realise that they aren't in this alone.
Of course it may be a total flop, but if we only ever did things that were guaranteed to succeed there would be no innovation whatsoever. That's another great thing about cancer. A few years ago the idea of failing might have stopped me altogether in case people scoffed and laughed as I made a fool of myself. Well hey ho, people are just so much kinder now, and if I make a complete idiot of myself, they'll just go "Oh well, she is that lady with cancer, you know, bless her". Or at least I can pretend that's what they'll say!
As well as everything else, we had a great day on Saturday, taking Toby to one of his very favourite day's out, the Lord Mayor's Show. We managed to get a special Disability Pass so that we were able to drive straight through the cordons closing the City of London Roads to all traffic, and then park just yards away from the parade. So it was cold with torrential rain and we all got soaked to the skin, but it was such a happy day, with Toby on Cloud Nine as you can see from the photos.
And yes, that really is a camel!
Friday was Cancer Day. Not only was it my 3 weekly visit to the chemo-room for another dose of Herceptin and Zometa, the two drugs that are hopefully holding my cancer at bay, it was also my 3 monthly appointment with the Consultant Oncologist.
He is a lovely man, everything looks very encouraging, and there wasn't any bad news, indeed, there was actually some good news, so it was a bit of a surprise that it left me feeling low and sad all over the weekend.
The good news is that they have taken the decision that I'm going to stay on Herceptin indefinitely. The usual time is one year, which is roughly how long I've already been taking it. However, in women like me whose cancer has already spread, sometimes it is being taken for several years. The drug itself has only been around for 10 years, and there are pockets of women around the globe who have now been on it for 6 or 7 years or even longer, and many seem to be doing incredibly well on it, and it seems to be holding the cancer back very successfully. It they are also taking Tamoxofen or Letrozole to block their oestrogen levels too, then the odds of it working well are further increased. I come into that category since I also take Letrozole, and although there are no guarantees that it will work in every case, and there are also cases where it can suddenly seem to stop working, it is really good news.
Breakthroughs are being made in cancer treatments all the time, so the longer I keep going, perhaps there will be other new options I may be offered further down the line. So I should be dancing around the kitchen thrilled to bits, but I'm not. At first I felt flat, then very low indeed, and I'm really not sure why at all. It's probably another layer of acceptance that, whether I like it or not, cancer is lurking and will always be lurking deep inside my spine, watching and waiting until it can pounce and spread and kill me. My job, and the job of the medicines I'm on, is to do everything we can to outsmart it and keep it on the back-foot, and I suppose this weekend it just hit me all over again that that's not really the way I want to live my life, with this huge scary shadow looming over me and trying to kill me. I try to tune it out most of the time and just get on with living, but I suppose hospital appointments are always going to bring it out into the open and back into the room to bite me on the bum all over again.
I'm feeling better about it all today though, and getting the whole thing back into a more manageable perspective. Part of it is about realising that I can never turn the clock back and be exactly who I was the day before diagnosis, too much has changed. I will never feel completely well again for starters, the doctor on Friday said that this breathlessness and chest pains is probably more to do with the mastectomy scar tissue and will be with me life-long. Unless, and this one will really make a load of you who know me, or have read my previous post My Needle-Phobic Past, laugh long and loud..... unless I am prepared to try Acupuncture. We actually have a lovely, highly-skilled and very patient acupuncturist in the family, WM's sister, but it still scares the living daylights out of me.
I know that I'll never be able to walk far without becoming breathless, I know that the agonising joint pains from the side-effects of Letrozole will continue to make me feel like a crippled and weak 103 year old, and I know that the numbness in my fingers and toes won't ever subside, and that the resulting clumsiness will continue to cost me a small fortune in broken crockery. I know that my stamina will never be once what it was, nor my concentration, and I also know that forever more people will know me as "that lady with cancer". It does change people's perceptions about you, which can be isolating and lonely, but I suppose I try to change people's perceptions about cancer too, so it probably evens out.
The one great thing about having cancer for me though, is this. It really focuses the mind, it makes me want to really live and get things done, and although I could never fib and say that procrastination isn't one of the things I do really really well any more because I'm as good at it as anybody, cancer does motivate me to get on and do things that I've spent years dreaming about.
Like writing a book! Yes, really! I'm three chapters in with nine more to go, and I am so excited about it all. Last weekend I spent three days at a Seminar called "The Millionaire Author's Bootcamp" which has totally inspired me to get going. Each day at the Bootcamp we had 4 motivational speakers each talking for 90 minutes on book publishing or subjects closely related to it like PR, Self-Publishing, Internet Marketing, Public Speaking, Finding a Publisher, all sorts of things. Completely fascinating, and really gave me the kickstart I've needed for ages.
A lot of the speakers were published authors who were now very wealthy indeed, not necessarily because they had written the best book in the world, but because they had mastered how to really market it successfully on the internet, and then knew how to really engage an audience as a Public Speaker, where they were able to talk authoritatively about the subject of their book and get paid pretty well for it too. These were ordinary, nothing special people, people like you and me, and I just feel that, with the children I have, and the financially tricky situation we have stumbled along in ever since they were born, I owe it to my three to do what I can to earn some money to help them on their way into adulthood. Goodness knows, they have triumphed over so many difficulties already, and they may lose their mum well before they are ready to cope alone; a little bit of a nest-egg behind each of them might make all the difference.
I've also signed up for two more courses which I can't afford at all - one on Internet Marketing and the other on Public Speaking. The fact that I can't afford them means that I have to work really hard to implement any or all the strategies I'll learn. One of the recurrent themes on the three day seminar last week was to start living like a millionaire ..... well I've certainly been spending like one! At this rate I've have the family homeless and living in a cardboard box by Christmas unless I really make this happen - what better incentive could there be?
The book is aimed at parents of special needs children, I'm writing the book I wanted to read when Toby was first diagnosed all those moons ago. It's going to cover things like how to deal with the armies of professionals and still get the best of services for your child, how to build a support network of the right sort of help from the right sort of people, how to ensure your other children still have a gloriously happy and normalised childhood, how to ensure you don't go under and drown in the sea of admin - fancy me being the one to be advising other people on how to handle all that paperwork appallingness that comes with the territory of special needs? Ha ha ha, a match perhaps to start a bonfire in the garden? It's also covering education, a complete special needs minefield.
There are dozens of "advice" books from specialists and experts, but no parenting guidebook that I can find that is written by another parent who has learnt the hard way, by living and doing it. I'm hoping it will make parents like me smile too sometimes, and help them realise that they aren't in this alone.
Of course it may be a total flop, but if we only ever did things that were guaranteed to succeed there would be no innovation whatsoever. That's another great thing about cancer. A few years ago the idea of failing might have stopped me altogether in case people scoffed and laughed as I made a fool of myself. Well hey ho, people are just so much kinder now, and if I make a complete idiot of myself, they'll just go "Oh well, she is that lady with cancer, you know, bless her". Or at least I can pretend that's what they'll say!
As well as everything else, we had a great day on Saturday, taking Toby to one of his very favourite day's out, the Lord Mayor's Show. We managed to get a special Disability Pass so that we were able to drive straight through the cordons closing the City of London Roads to all traffic, and then park just yards away from the parade. So it was cold with torrential rain and we all got soaked to the skin, but it was such a happy day, with Toby on Cloud Nine as you can see from the photos.
And yes, that really is a camel!
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